Don’t go whistling past the digital graveyard!

Written by Angela Bruce, RN

Thanks to Kaylee for directing us to a blog post that reminds us how important it is to get our digital house in order.  On August 10, 2019 she provided the link to this comprehensive guide containing current advice and instructions on how to plan for your digital legacy and your assets after you die. The author of the blog states,

With hundreds of millions of social media users, the number of social media accounts of dead people may outnumber those of the living in a few decades. 

But as you consider the eternal limbo of those accounts remember this cold, hard fact: In this digital age, your loved ones will be faced with the complexities of managing your digital assets after you die.

Accessing digital devices like computers, hard drives, tablets, and phones, may be impossible if your loved ones don’t have passwords or encryption keys. Not only may they lose irreplaceable photos, important letters and documents, there are financial assets that may be forever lost.

These monetary assets go far beyond your bank account. For example, Bond Brand Loyalty estimates there are currently $16 billion dollars in unredeemed loyalty points in Canada alone, and many of those dollars will never be redeemed if the owner has died with no arrangement to transfer ownership of the points. According to a report in the Globe and Mail, by the end of 2020, the average Canadian will have accumulated $10,000 worth of digital assets, including money stored in online payment accounts, loyalty program rewards, virtual currencies and online investment or bank accounts.[1]  Keeping track of your digital presence is a sound, personal, and economic practice.

Digital assets to consider when making an inventory of  your online presence include:

Financial Access

  • Bank accounts
  • Online payment accounts (such as PayPal)
  • Online seller accounts (like Amazon™ or eBay®)
  • Brokerage accounts
  • Cryptocurrency investments

Communication

  • Email accounts
  • Social media accounts
  • Forums or chat rooms
  • Blogs or websites you own
  • Online gaming accounts

Cloud Storage

  • OneDrive; Dropbox, GoogleDrive etc
  • Digital photos, videos and music files
  • E-books or audio books

Loyalty/Rewards Programs

  • Credit card loyalty program rewards
  • Travel rewards programs (such as Air Miles)
  • Retailer loyalty programs

Copyrights

  • Logos, illustrations, artwork or animations you own
  • Digital copyrights, trademarks or patents[2]

Adding to the confusion, there is a wide diversity in policies for dealing with the death of platform members.  Legislation on digital death has not kept up with the rapid pace of technological advancement.  Worldwide, there is a lack of established laws and this has allowed companies to choose their own rules.  Social media platforms have a patchwork of ways for dealing with a member’s death.  Customer loyalty programs may not be transferable. Purchased digital media assets, such as iTunes or eBooks, cannot be transferred.

Three decades ago, there was no such thing as planning for your digital death. Now it is increasingly seen as a task that is essential to ease the work of our loved ones after our death, allowing access to funds to pay bills, cover other expenses, and to manage or close accounts. Think of it as advance care planning for your digital life. Tackling this chore will save many hours of stress and heartache for your loved ones and potentially save priceless memories, assets, and facets of your life from being irretrievably lost in the cold vacuum of cyberspace.

Have you had any experiences dealing with digital death? Please share your story in the comments section!

Warm regards,

Angela Bruce

Looking for more information on this subject.

Death and Digital Property: What happens to your online life when you die?

 March 29, 2015 by Kath Murray

Creating a Digital Estate

April 5, 2015 by Kath Murray

 


[1] https://www.theglobeandmail.com/investing/globe-wealth/article-dont-forget-about-digital-assets-in-your-estate-plan/

[2] https://www.cibc.com/en/personal-banking/advice-centre/family-finances/estate-planning-for-digital-assets.html

Voices to Lead | A Modern Application of Florence Nightingale’s Legacy

Guest Post by Angela Bruce, RN

Florence Nightingale in the Crimean War

Photo Credit: www.healinghealth.com

When I think of a single nurse’s voice, Florence Nightingale comes to mind. In the midst of the Crimean War battlefields, the “lady with a lamp” provided compassionate care to the sick and injured, murmuring words of comfort and offering a touch to frightened boys, some crying out in distress. In the squalor Florence triaged as she went, knowing that so many needed care and that few would survive to see another day. While Florence is known as the “lady with the lamp” she also used her voice to effect change. She galvanized others to lead with their voices and demand changes. Voices that said it was not acceptable that ten times as many soldiers died in the Crimean War from infectious diseases than from injuries, and that it was also not acceptable that hospital floors in England were covered in straw that was matted with urine and blood. These voices for led to the sanitary conditions and standards of care that we have today.

Today, there are still many serious issues affecting health care where voices that lead could effect change, such as:    

  • Lack of access to care for any people in need
  • Scarcity of resources, e.g., personnel, diagnostic services and so on
  • Non-essential antibiotic use in a world of increasingly resistant organisms
  • Restricted access to opioids for people experiencing pain and other severe symptoms, in response to overdose deaths and the Opioid Crisis.

I hope nurses can agree that these are urgent issues.

Voices to Lead for Palliative Care Education

Voices to lead can help ensure hospice and palliative care education for everyone

Photo Credit: https://moments.nhpco.org/news-blogs/hospice-photography

Each of the serious issues listed above directly affects the capacity of health care professionals to provide hospice, palliative and end-of-life care. In 2018 the Government of Canada’s Framework on Palliative Care in Canada Act acknowledged the need to prepare caregivers in their long term goal that stated, “… all providers have increased capacity to deliver quality (palliative) care.” Preparing primary care teams to integrate palliative care for individuals with any life-limiting illness, from early in the disease process through to and following death, in all care settings will help address the serious issues listed above. Using our voices together to integrate and strengthen palliative care education in core curriculum has the potential to prepare health care professionals to deliver palliative care by:

  • Placing the topic of death on the table as a normal part of living and a topic for discussion.
  • Encouraging information sharing, advance care planning and discussions of goals of care.
  • Supporting the intentional use of emergency departments and acute hospital admissions.
  • Supporting informed and effective prescribing of medications for symptom management (including safe prescribing of opioids).

Providing learner-centered palliative care education in the workplace, and mentoring individuals before, during and after education, may also inspire more members of the health care team to seek out additional education and become specialist palliative care providers.

With the aging population, limited resources, and the desire to provide excellent care for people with any life-limiting illness, palliative care needs to be part of core curriculum for every member of the health care team.

Just as our predecessors used their voices to lead and improve care for today, let us join our voices to lead and improve care for tomorrow. 

What are PSWs saying about the text, Integrating a Palliative Approach?

Life and Death Matters reached out to a few colleges and hospices using the text, Integrating a Palliative Approach: Essentials for Personal Support Workers, and companion resources in their teaching  and asked permission to survey students about their learning experiences in hospice and palliative care. An online survey was distributed to individuals who used the resources and were completing their practicum, had graduated or had completed a self-study program. The survey results resoundingly endorsed the text, Integrating a Palliative Approach: Essentials for Personal Support Workers, as a positive learning tool for learning to provide hospice, palliative and end-of-life care.

In the survey, students were asked to reflect on their learning experiences and indicate which statements they agreed with. These are some of the results:

  • 80% indicated “I will keep this text and continue to use this in my practice.”
  • 75% indicated  “I know how to support a person experiencing common symptoms of life-limiting illness”
  • 74% indicated “I strengthened my skills for communicating with people experiencing life-limiting illness and their family.”
  • 83% reported “I learned why self-care is important, and how to provide self-care.”

Students self-reported what they had learned from the text and companion resources. The results indicate the percentage of respondants who reported learning each topic from the text and resources.

  • 90% – How to recognize different patterns of dying
  • 88% – Ways to prepare myself for providing hospice and palliative care
  • 86% – Strategies for communicating with a person and family about difficult topics
  • 83% – How to recognize, observe, record and report when a person is experiencing a common symptom, e.g., pain.
  • 83% – The different ways people experience loss and grief, and how to provide appropriate support
  • 88% – The common changes in the last days and hours of life and how to support a dying person and family
  • 86% – How to provide self-care to maintain my personal health when working in hospice and palliative care.

 

This survey strongly supports teaching hospice, palliative and end-of-life care to PSW students using the text, Integrating a Palliative Approach: Essentials for Personal Support Workers, and companion workbook, podcasts and videos.

There are more results, including the interview of instructors to report. Look for that information in upcoming blog posts.

 

Today is Advance Care Planning Day and Why it Matters

When someone says, “It was a good death” they may mean that from their personal perspective it was a good death. However, a death is only a “good death” if the person who is/was dying is honoured and their needs, preferences and goals are considered as life circumstances change, disease progresses and care plans are developed. In striving to honour the individual, perhaps then we can talk about a good death, an  appropriate or a person-centered death.

“Three-quarters of Canadians (74%) report having thought about end-of-life.” (1)

But how many of these individuals have talked with people close to them about their preferences? How many have spoken with their health care team and recorded their thoughts? How many have documented Advance Care Plans? If wishes and preferences are not shared and documented, it may be difficult to honour and meet a person’s wishes for an appropriate death.

This is where Advance Care Planning comes in.  Advance Care Planning is one step in helping a person experience a good death, an appropriate, or a person-centered death. Advance Care Planning can greatly assist health care professionals to provide best care, to support each person to live life fully until their last breath, and to honour them following death. In the next decade, Baby Boomers may start benefiting from the integration of a palliative approach in their care. As this large and vocal portion of the population reaches their senior years and deals with life-limiting illness, it is possible that engaging in Advance Care Planning may become as normal as developing birth care plans for expectant parents. 

Today is Advance Care Planning Day. It is your day to discuss what is important to you, what you think you might like when you are sick, when you are declining, and ultimately, when you are dying. This is your time to talk with those who are close to you, to record your thoughts, and share your thoughts with your physician or nurse practitioner. Begin the conversation today and continue to discuss plans as circumstances change.

Whatever your preferences, today is the day to open the door, and set a time to talk with someone who is important to you about your wishes.

The Speak-Up Campaign provides resources to stimulate conversations and guides to help you record thoughts. In the United States, the National Healthcare Decisions Day and the Conversation Project provides resources for making your wishes known. The Life and Death Matters Care Planning Cookies can stimulate conversations.

Go for it.